What Is ‘It’?

I am often asked “How do you do it?”

I just do.

You see, I don’t even have to ask why I do what I do. When you’re doing it, it is part of your daily life, it just happens. Others will always want to know how, and it’s difficult to explain.  It’s natural, a part of me.  I didn’t train for this, I didn’t plan to begin a non-profit, to help support those in need, to bring them comfort. The cause found me.

If you are reading my blog for the first time, you might be wondering what is ‘it’?   Sometimes I ask myself that very question.   The ‘it’ that people question is never the same for two people, or it could be different day to day.  For instance, recently it was being with a Brain Buddie and her family as she is preparing to leave this life. She didn’t plan this. Her family didn’t plan this!  The ‘it’ was walking into a home filled with heartache but knowing that even if for just a moment If I can share FAITH, HOPE or LOVE then ‘it’ is being accomplished. I pull up to the house praying for guidance on my journey today. I walked in to see my friend in her hospice bed. She was receiving meds so I was able to spend a few minutes with her family.

My ‘it’ was whispering in the ear of my friend what an amazing champ she has been throughout her fight with this brain tumor. I shared how much I love her and more. It was making sure her family knows they are loved and that I am hurting with them. No silly words, nothing from a script, just the real me, a friend to the end!

A friend loves at all times. Although I hate what this disease has done, her memory will not be stolen by the brain tumor. I told her I will keep her story alive and tell other buddies she beat the odds!  She is our champ. It was a tough day but this is what I am called to do.  This is what ‘it’ is. (this was written Tuesday

I love my brain buddies.

 

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September 2, 1998

Sixteen years ago my life took a completely different turn. On August 12, 1998 I was diagnosed with a baseball size mass. On this day, September 2, 1998, I had it removed, and learned it was a grade 3 Anaplastic Oligodendroglioma. Between then and 2007, I have had 5 surgeries. Before the tumor, I worked as a banking relationship manager. It’s funny how life-changing events can alter your path. I have found support more than statistics is vital to helping share hope or encouragement.

In 2001 I sent my first gift package to a fellow brain tumor patient. That was the beginning of Gray Matters Foundation. You can read my entire story here.

Now here I am, sixteen years later, and Gray Matters and I are still going strong. It’s my ‘Sweet 16’, as my husband has dubbed this year, and we are going to have a celebration. On Saturday, September 20 at 5pm we will be having a party at the Dirty Pelican in Glendale, and will feature delicious food and there will be many baskets and other items raffled, and each will be in honor of one of the many Brain Buddies I have met over the years. We also will have music provided by the 80’s rock band Sluggo, and that will be a great finale to the evening. The whole evening is going to rock! You can get more information and RSVP right here.

I’ve met so many people along the way who have been affected by brain tumors, either directly or indirectly, and on this night we will celebrate and honor everyone. I am so grateful to be able to offer support to all of our Brain Buddies, I hope if you are in the Phoenix area you are able to come out on September 20 and join us. Let’s show everyone at The Dirty Pelican that night that brain tumors stink, that’s what we think!

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Where does time go?

Time erases no memories.   22 years ago  I sat with my grandma while she took her last breath.  Harsh to say but rather peaceful considering my personal belief is she is in heaven now.  The 9 weeks leading up to that evening were such a whirl wind.   I know listening to me tell you how I miss my then 62 year old grandma to some hardly compares to the loss when they are dealing with the loss  of a spouse or a child or a dear friend for that matter.   I am not here on this blog to create a RATING SCALE of who’s pain is better or worse.   LOSS SUCKS and everyone experiences it differently and in their own way!  At the time  of her death I was 22 with a 2 & 3 year old my life was so all over the board.  I needed her and she was dying I was devastated .  Her death was my first experience watching, holding the hand of a loved one dying from a  brain tumor.  For that matter it was the first person I had been with  EVER while they were dying / died .( never dreaming I would be with countless holding their hands in years to come)    All  I knew was this stupid abbreviated 3 letter word  GBM was killing my grandma and it did so in 9 wks after having her brain surgery.   Sparing you all those details the loss is real.  22 years she is missed but will never be forgotten. My heart will forever have a space that contains the love we shared.   Over time the pain has softened and as many say ” LIFE GOES ON”.    In my life it has gone  on  but I do so with  keeping  her memory alive.  I am not stuck in sadness but I am sad for the things I didn’t get to enjoy with her.   I realized some years back I can do things to keep her memory alive or let that die also.  So to me LIFE WINS and when I tell stories of who she was,  sharing her LIFE  the brain tumor looses.  You see the tumor died when she did.  Her memory lives on as long as we keep telling her story and the tumor part is so small in compared to all the other goodness. If she were  here she would be 84 in a few weeks now that’s crazy.   When I am with family I’m  usually the one who brings her name up and then we share stories and we giggle .  The best are the ones that make you smile or even tear. (  Now of course their are jokesters in every family) .   I have to slap my dad and my uncle on behalf of my GMA  a heavenly one of course .  They tend to get to funny and start sharing  the TMI stuff  UGH my grandma If she could hear them  she would say their names so STERN when they acted funny like that.  My family  , cousins and sibling who will remain nameless but who  are reading this I can see you smiling and you know exactly what I am talking about when it comes to dad and Uncle.    OH and her  food she made lot’s of yummie stuff but mmmm.  the most noted  was what she made at work ,she was a baker.    HER DONUTS! and everytime I smell one I think of her.  MMMM the yummie WINCHELL donuts she baked.  ONE PROBLEM ( a minute on the lips has caused  a lifetime  of  exercising for these HIPS!) trust me those donuts were dangerous on the girls in our family LOL.  SO we share about Grandam because we love,  because she is important.  Many people don’t know what to say to friends that loose a love one.  Maybe not right away  but we do like to share memories. It’s ok  to talk about those we miss and love even though they are gone.  It’s when you don’t talk about them that it hurts us.  Tonight 22 years later I remember it like it was yesterday.  The crazy part, the end of her journey in this life was all part of what came to be  the beginning of what I was called to do today .   The creation of  GRAY MATTERS FOUNDATION.  You just never know what comes of life’s journey and if you listen closely and  you handle it with care . It all works out.   I sure  didn’t see this coming.  Back then and now she was and is my first &  FOREVER #ifonlyforone

 

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If Only For One: Choices

Sometimes, If Only For One can be a choice.  Making one little choice can greatly alter your course, and you may not even realize it.

As many of you know my birthday was on July 7th and my mother’s is the 8th.  I wouldn’t see Mom on her birthday, so I asked her to meet me for ice-cream on my birthday (it was a spur of the moment plan but I thought it would be a nice treat and just the two of us).  I also had to take care of a payment for a credit card that was due. I figured I would pay it online rather than dropping it off because I needed to get to my date with Mom.

I made the call and the payment. At the end the auto system said “if you are processing this after 5:00pm it won’t post for two days” because it was considered after hours.  It was a balance of $10.00 and it would have a $25.00 late fee. I decided to go in and make the payoff in-store and avoid a $25 fee for a $10 final balance. I decided to enjoy my time with my mom first and stop by the store after to pay the $10.00.

When I made it to the store, I asked the girl at the register if the payment had been made. She was new to the job and didn’t know so I went to customer service. They said an in-store payment is processed the same day because it’s local. If you pay online or on the phone it’s back east so it is considered late.

As I was leaving the store, the cashier saw me at the door and asked about the answer to my question. She felt bad for not being able to tell me. I told her, and said no worries. I explained there are many things to get upset about; life is too short you just never know what can happen. This was not an issue.

Well, that being said, I was driving home and it’s about 15 minutes away.

Earlier when I phoned to make my payment, the automated message told me the processing time. This prompted when I chose to go by the store to pay. I made a choice to pay after ice cream.  I could have gotten upset and been a jerk to the cashier, but made one little choice to keep Peace.

25 -30 minutes earlier, on the very street I would be traveling on, a car ran a red light. It hit a car in the lane I would have been in.  They were re-directing traffic and the way I would have been traveling if I had been returning from my ice cream date. I could have been the one, the one who was hit.

When I talk about IF ONLY FOR ONE it can be in all we do. One choice can cause a chain of reactions, or a change of ACTIONS. I know one thing for sure, by taking the less stress and lighter look at situations, tonight I was the one who was spared.

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Brain Buddie Gives Back: Way To Go, Flo!

Flo is a Brain Buddie who jumped right in to help and give back. She is one of my biggest fans and is not shy about telling anyone and everyone about Gray Matters. I met her at the local support group I facilitate. Right from the start she went full force into helping others as a way to give back. She felt she was beating something meant to beat her, and she wanted the world to know that’s not the case. After receiving a few cards and goodies from Gray Matters it was clear she wanted to do the same and became one of our official volunteers. Flo writes:

“My Army military service was both active duty and reserves from 1971 to 1998 for 27 years of duty. At work one day at BC/BS (medical health coverage) on a Monday I had a bad headache and saw my neurologist and on Wednesday I still had a severe headache and he told me to go to ER. Arriving about 9:00 AM (Phoenix Baptist Hospital), a diagnosis of a brain tumor was confirmed by CT/MRI, by 3:00PM with next day surgery set for 9:00PM. All within 30 hours I had surgery on October 2009. 5-days later the lab confirmed glioblastoma multiform Stage 4. As of October 2014, I have been a 5 year survivor. Participating in Gray Matters Foundation has been and shall always be a blessing to all.”

Flo has been an amazing supporter and Brain Buddie. She has made Gray Matters over 200 cards, and mails them out. She has donated time taking photos for events we participate in and she has committed to keep scrap books for all to see and learn about the foundation.
An example of what an amazing Buddie Flo is: I just received a package of cards and a book of stamps from a friend Flo met at an appointment at St Joe’s. She wrote me a personal note, and sent me 20 cards and stamps to cover the cost to mail them. She thanked me for what I do because Flo shared such nice things. Flo is doing exactly what “IF ONLY FOR ONE” IS ALL ABOUT!

She has rallied her husband Paul (or “what’s his face”, as he likes to call himself) to get involved as well. We are so fortunate that they are able to contribute in so many ways to Gray Matters Foundation. Way to go Flo you are our ONE! You are one OUTSTANDING BUDDIE!

For more information about how you can become a Brain Buddie, please visit http://www.graymattersfoundation.com/brain-buddies/. For information on how you can contribute to Gray Matters Foundation, please visit http://www.graymattersfoundation.com/contact-us/.

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Grandma, the neurosurgeon, a tree and me…a story of coincidences and love

I’m so pleased to be given the opportunity to share this story in International Brain Tumour Alliance’s annual magazine, “Brain Tumour.” I got the chance to share this story about my neurosurgeon after sharing it in conversation.

This is a story about a grandmother, a wonderful neurosurgeon, a tree and me…

Click here to subscribe to IBTA’s “Brain Tumour” Magazine and receive their 2014 issue with my article in it. You can also check out their website for more information at theibta.org

 

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IF ONLY FOR ONE I talk the talk and walk the walk

If you know me just a little or read my casual chatter you know I attempt to walk each day in an effort to keep clarity & physical well being in my life.  It get’s to be a tricky balance in the AZ heat but Im still managing to average 5 miles a day with a 7 mile target in mind.  One might think in the middle of the desert  ”BRAIN TUMORS”?  So go with me on my WALK for a minute:   I am all alone walking, self talking my plans and agenda etc.   You know minding my own business SWEATING !! drinking lot’s of water but enjoying my walk.  So visualize  I live out rural lot’s of DIRT, CACTUS and  homes with acre lot’s etc ( occasional coyotes LOTS of rabbits and lizards) parts of the area are paved some are not  yadda yadda.  So this particular day I was just getting in the grove when I see this little truck coming my way and a hand waiving out the window as it  pulls up next to me.  It’s my neighbor  she tells me how she really wants to start walking and someday she will get out here with me LOL  We laugh because she touched my shirt and its soaked  only because I wet my white long sleeve shirt before I leave and she thought I was sweating HA HA  and I don’t even get a mile and it will be dry.   She says; I stopped because you have your foundation stuff & I know you help kids and all with tumors but I wanted to see if you could help encourage an adult.   ME : I help all families.   Most people think it is just kids because it’s fun.    We try to bring a light hearted look to a serious subject.  I know from personal exp when dealing with BT you have plenty of time to HAVE to be serious so.  We encourage ALL AGES.   She proceeds ”  I met this lady at our vacation bible school group and she has a brain tumor.  She is a young mom  I told her about you and I was hoping???  Well I was hoping you could give her some support.??  ME:  Perfect timing  group is this week I will contact her and we will help her not feel alone.   neighbor:  COOL!  I was hoping you would be able to call her.              So BT buddies   when you talk the talk  and learn to WALK THE WALK   people will come!   Brain Tumor Awareness it happens when you least expect it.   When your a voice for BT awareness like me  it will happen in the dry barren desserts of AZ.   I should never be surprised about my if only for ones! and where they take place.  I will live with anticipation for my next ONE

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MY IF ONLY FOR ONE celebrates TWO

We ended our 2014 GRAY in MAY with a meet & greet @scotts generations a local deli  who graciously hosted our event.  More details on the wonderful turn out but for now a story of EXACTLY why we do what we do.  I never met the Colboune family in person until this event.  We were brain buddies on the phone & email  We met because they had heard about GRAY MATTERS FOUNDATION &  how I help families on this brain tumor journey.  We were excited about meeting and when Carrie and her family walked in the door I knew right away.  She smiled and introduced me to her husband Mario the survivor and her two children.   The day was a meet and greet so we did just that.  I was able to show them up close and personal PHOTO’s of how I have helped children, adults , family & friends effected by this disease.  The photo albums and poster boards showed the events I have been actively part of for over 10 years.  What makes this so important is you get to  see a visual snap shot of what I do.  Some of the photo’s show when I’m with the families in the midst of the journey.  I am in the hospitals visiting.  I sit with them pre surgery ,  I am at funerals  ( yes it’s not just the ups it is the difficult)  that’s what families are supposed to be SUPPORT during the UPS and DOWNS . Gray Matters Foundation is about the support not statistics.   I come along side you to remind you,  your not alone.  I understand ( no two people experience the same pain I get that ) But I relate I have lost a family member and TOO MANY brain buddies!  AND most of all  I know the pain personally  FIVE! surgeries  yep, &  radiation and chemo for a year.  Oh and  given the death sentence  ”THE STATS”. That is why we focus on the support.  You have plenty of time to hear and deal with the stats.  If only for one!  If I can bring a light hearted look to this serious subject even for just ONE person ONE day at a time  well I am fulfilling the mission I started many years ago.  So today Mario & his family  walked around and looked at the examples of encouragement and hope and in that they shared how  he was going to celebrate his TWO yr Tumorversary.  Well Perfect! I brought a  celebration gift it must have been just for him : ).  It was a  glass  filled with fun & the  kids liked it to.  I asked them to gather around  & tought them an important part of the tumor journey.  Celebrate Life!  I said now on dad’s TUMORVERSARY it’s very important  whenever mom and dad say it’s ok ( empty all the candy ) then you fill this with soda or whatever they say is allowed and you tell dad it’s time to toast.   You give him a big hug  and you tell him it’s time to celebrate his  TWO and “we are happy to be with you”.   You see that’s what it’s about  we come along side and for just a moment if we can help the kids, families  find the goodness in something that steals so much of their tender time  ….well today  they were my one  and enjoyed TWO!   more on the rest of the day when we get our photos.  Thank you to all those who participated it was an amazing day . And for all my sponsors this is what you do when you help. 

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Wear Gray In May!

Hello Brain Buddies,

May is finally here, and this month is so special! As many of you already know, the month of May is officially Brain Tumor Awareness Month. It is a perfect time to come together as a community to bring awareness to something so many still do not know enough about.

Here at the Gray Matters Foundation we are wearing, you guessed it, the color GRAY every day in May. Wearing gray tells the rest of the world that you’re fighting, know someone who is fighting, or you’re dedicated to winning this fight. It shows strength, courage, and most of all, SUPPORT for those people whose lives are or have been affected by brain tumors.

We have a fun contest for the month too! We want to see you sticking your tongue out at tumors. Take a photo showing us that brain tumors STINK, post it to our Facebook page, and win a T-Shirt! All we ask is that you cover the $6 shipping so we can get your shirt to you. We are also limited on sizes, so it is first come, first serve until they are gone! We currently have:

+24 XL
+8 dozen Adult Medium
+6 dozen Youth Medium
+5 dozen Youth Large

Have fun with it- and stick out those tongues at tumors!

Have a story you would like to share? We would love to hear about it! Keep the IF ONLY FOR ONE stories coming too. Kindness matters, not only to those affected with brain tumors, but also to their family and friends. You never know where you are going to meet a fellow Brain Buddie!

Get out there and go gray for May! Look up an event in your area, and wear your gray proudly! There are so many activities during the month of May, not even directly related to brain tumors, but a perfect opportunity to bring awareness and empower someone. If you ever need support or have questions, I am always available to you. Contact me any time at http://graymattersfoundation.com, or on Facebook.

Above all else, Brain Tumors Stink, That’s What We Think!

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If Only For One ” Grocery Store smiles”

I am checking out of the grocery line and the person before me donated a turkey.  The cashier paged the mgr to find out what to do with it.  The mgr was not aware the person who donated the turkey had already left and thanked me.   I smiled and said Oh your welcome.  I looked at the cashier and the lady behind me ( who was actually next me)  I said Oh seriously I am greatful for the many donations  I receive.  I have a foundation I started and …….. ( so all of you reading know the story)   The girl next to me says OH MY GOODNESS my grandma and mom died from a GBM.    So  today  MS. ANGELA  was my one.  She of course is fearful is she next.  We talked for a few I gave her my card and we agreed.  No accidents EVEN GROCERY STORE chats are meant to be.   Thankful for more than the turkey  that’s  ME!

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